Baby Kaheel Clark-Smith was diagnosed at birth with Epidermolyosis Bullosa (EB) after he was born with small blisters on his arm.
However, it was dismissed as a mild case until it became an extreme situation resulting in blisters and about 60% loss of his skin. Then doctors re-diagnosed it as a worst case of the disease.
She said, ‘This is their first child and they are so overwhelmed and broken. We found out the day he was born and didn’t know anything about it. We had to do all the research at home.’
Talking about her son, first time mom Brandi said, “We found out this was the ‘worst disease you’ve never heard of’ and we were so heartbroken. Even a cuddle or a kiss can cause his skin to blister. The doctors gave us false hope because he was eating and all his vital signs were fine. Then he had a bad breakout and he was admitted to NICU on Jan 4th. “We just got back the results from the biopsies and have been told it’s the worst type of EB.”
Brandi started a GoFundMe page to help raise $30,000 for the medical flight to get the baby to specialist EB centre in Ohio, for the expensive special clothing and bandage needed to wrap Khaleel since the hospital where their son was born in Seattle, Washington has very little experience in handling such case.